We are home. Eli got discharged this afternoon. We really loved his inpatient doc this time and were very lucky to have gotten onto the silver team with him! Eli's blood sugars are low enough to earn him the title of hypoglycemic, but not danger level. His mito doc, Dr Shoffner, does however say that they are going to make him feel way crappier than a normal kiddo. Eli now owns his own glucometer and all the supplies that go with it. He will test 6 times a day, and any others PRN. There is a base plan in place for when his sugars drop, and a more detailed plan will be made over the next few days. Dr Shoffner also wants his fluids increased by a lot. He wants 120ml/ per kilo, and currently Eli is getting 96.8ml/per kilo. So we are way short. The likelihood that Eli's body can handle that kind of increase is pretty slim. There are going to be meetings and talks tomorrow to try and figure out what next. They are also pushing endocrine to get him in quickly.
Tomorrow Eli has his hematologist and we are looking forward to what they have to say about his clotting and anemia.
As of this morning Eli is running a super low grade, and is really sleepy. We are hoping he didn't pick up anything inpatient. Only time will tell.
We will update more as we know more over these next few days.